Rupa Nadkar, Behavior Analyst and AOTS Professional Volunteer
Our guests consistently tell us that our professional volunteers are amazing, and we wholeheartedly agree! They are our secret sauce. Talented, educated, committed, caring, bright, eager, compassionate, patient...the list of adjectives that describe these young professionals goes on and on. In this post, we'd like to introduce you to Rupa Nadkar. She's been part of "Team Orange" for just over a year now and we think she's terrific, and so do the families she has touched on their special vacations.
How are your educational and career goals supported by what you do for Autism on the Seas and vice versa?
I am a Behavior Analyst at Devereux PA CIDDS working with clients ages 6-21 with primary diagnoses of Autism. As I plan to expand my education by pursuing my Masters in Education, AOTS has supported my experience in the field. AOTS also supports my career by providing knowledge on a different aspect of families' lives. Many times, as educational professionals, we only see how having a child with Autism effects a family educationally. Working with AOTS has brought to life families' lives outside of just schooling.
Describe your experience as an AotS Staff Volunteer?
My experience as an AOTS staff volunteer has been life-changing. I have been able to combine my greatest passions in life: travel and working with children. AOTS brings spontaneity, love, and happiness into my life. I have met amazing families and staff members across the country that I will stay friends with for a lifetime.
Why do you do this?
I joined the program because I genuinely enjoy each experience that I've had with AOTS. It is fulfilling and enjoyable at the same time. Each experience is different and I feel as though I grow as a person with each new family cruise encounter.
Can you share some examples of connections you've made with families aboard AOTS cruises that have made a lasting impression?
When I am assigned to a family that options for 1:1 dedicated staff support, the connection really goes deep. I am able to spend the entire cruise with their special needs child and the whole family, which makes me feel like I'm on a real family vacation and part of the guests' personal experiences. Having that intimate access to a loving family dynamic is moving. I still stay in touch with those families via social media and texting.
What are some of the most interesting, unexpected or amazing results/experiences that you have witnessed among AOTS guest families and special needs children?
On a recent cruise, one of the special needs guests used a wheelchair due to challenges with gait. We were able to support and encourage the individual to do things that the family never thought possible. This included activities, such as roller skating and ascending the rock wall. To see children with special needs whose expectations related to participating in onboard activities are low, then rise to the challenge and enjoy a new world of experiences and possibilities is particularly heartwarming.
This past June, the Lack family of Tempe, Arizona, joined dozens of extended family members on an Autism on the Seas-staffed Disney Wonder Cruise to Alaska. Their adventure was filled with surprises and adventure, including one-on-one time with Mr. Mickey Mouse, a helicopter ride, and dog sledding.
WATCH our interview with Rachel Lack, mom to Henry, documentary filmmaker, and creator of the new docu-series, "Across the Spectrum"
AotS: We’re intrigued with your story, not only from a guest perspective and your vacation with us, but also what you're currently working on professionally as a documentary filmmaker. I think folks who listen to us would really find it interesting. Why don't you tell us a little bit about your Across the Spectrum project?
Rachel Lack: As a filmmaker, when my son was diagnosed with autism almost four years ago, I was looking for documentaries and there wasn't really a lot out there about what happened right at the beginning when your child is first diagnosed. So, I thought, "I need to film this, and I need to film this for other people so I can help other people as I would have wanted to have been helped." When you get the diagnosis, a lot of times the doctors don't tell you anything other than, "Your child has Autism Spectrum Disorder," and maybe offers a few pamphlets. They don't really tell you what to do afterward. You're kind of hit with this tornado of emotion and helplessness.
I turned to my camera, and I filmed myself throughout. Especially the first year, I filmed myself a lot talking about how I was feeling and crying a lot, because that's what you do, especially in the beginning. But I wanted to also show people that it's not a death sentence. It gets better as it goes on. There's help. So I filmed myself, and I found four other families in the Phoenix area. I live in Tempe, Arizona. We are following five kids in Arizona. I've been skyping with three families in Massachusetts. We're following these eight kids, from the time they are diagnosed through adulthood, because it doesn't end when the kids are adults. It's going to be a long series. I'm learning a lot. We're almost four years into this.
Aots: Just so folks understand how long you've been doing this, your son, Henry, who's on the spectrum, is six years old now. He was diagnosed when he was two years old. Correct?
Rachel Lack: Yeah. Almost three. So he was diagnosed on October 14th, 2014. So two months from four years, and he'll be seven in November.
AotS: If folks want to just check in to keep track of your progress, particularly if you end up streaming your program on Netflix or some of the other streaming outlets like that, do you have a website?
Rachel Lack: Yeah. Right now our production company is Purling Place Productions, and the website is purlingplace.com. Right now we're still working on that, because we are starting the first season of editing. It took me a few years to figure out what direction I wanted to take with this. First, it was going to be a documentary, and then I realized how much information there is. It can't be just one documentary. I realized that it needs to be a series.
As I was filming these kids, I was like, "We need to film them throughout their whole," ... and when I met these families, I said, "We might be filming you guys till the kids are passed 18." And everyone was on board. It's great. I've been filming updates every six months with the kids. The ones in Phoenix we do some play dates with the kids. We've got a lot of footage of the kids together playing, parallel playing.
AotS: Yeah. There's a 360-degree view of every aspect from the parents' perspective, through the child's eyes. I think that's wonderful. I wish you luck with that. Okay. Now we want to talk about your vacation. You went to Alaska, right?
Rachel Lack: Yes.
AotS: Back in June? And you went with your parents, which would be Henry's grandparents. Right? You were celebrating their 50th anniversary?
Rachel Lack: Their 50th anniversary. Yes, and my three sisters came and their families. Henry was the only autistic child. My niece and nephew stayed with Henry and played with the AotS staff – it was great. Our experience was a little different than I think the average family would have, because we were the only family with an autistic child. We had two team members for Henry, basically, and then my niece and nephew. But they were really there for Henry to make sure Henry was okay. It was amazing. And Henry bonded with both Sandy and Jamie right away.
AotS: How did you initially find out about Autism on the Seas?
Rachel Lack: From doing the documentary I have become really involved in the community. I think from a Facebook group somebody posted about Autism on the Seas a couple of years ago. I thought it was really cool, and I started following the page. When my parents first told me about the cruise, they came to me first, because they wanted to make sure I was okay with Henry being on a cruise, being non-verbal. Since I knew about Autism on the Seas already. I said, "That's perfect. I know a company that we can contact that will help us." I just contacted them right away.
AotS: Tell me a little bit about Henry. Did you have any kind of concerns before taking the trip?
Rachel Lack: Yes. A lot of concerns. We have flown with Henry a lot, and we travel with him. I grew up in Toronto, Canada, so we go back and forth in the summer to Toronto, but we'd never been on a huge ship like this. I don't even think Henry had seen a ship. He had seen a ship on television, but he'd never seen one in person. We had no idea how he was going to be on the cruise, how he was going to react. You're nervous about large crowds. You're nervous about trying to get on the ship. That's the first thing that you worry about is the crowds getting on the ship, the waiting. They don't wait.
Henry loves trains. He will wait in line for a train, because he knows he's getting on the train. Anything else, he doesn't understand what he's waiting for. So he's not going to wait. There's a lot going on in your head as you book these trips, and you're like, "What did I just do?" But Autism on the Seas was amazing. Sandy was our team leader, and she contacted me a month before. Three weeks before we had a phone call. We talked for an hour. She had been on the Disney Wonder before, so she knew the ship and she knew Disney. Disney's a little different than Royal Caribbean, because they don't have the connection that Royal Caribbean does. But we had an amazing trip.
AotS: Tell me about some of the highlights with regards to activities on the ship. Did Henry do anything different that surprised you? Did he get involved in things that he may not have normally taken part in?
Rachel Lack: Everything surprised us about this. From the minute we stepped on, Autism on the Seas was there right away when we got there. They got us right through the lines. You see Team Orange, and you're like, "Yeah." They're right there in Orange. They had orange flags and they got us right on the boat. It only took about a half an hour for the whole thing.
We weren't sure about how he was going to be with the characters, because on the cruise they have got all the Disney characters. Right away Henry saw Mickey and ran to him. Henry tried to grab his nose, so Mickey was then touching his nose, then Henry was touching Mickey's nose. They were so great with him the whole time. Any of the characters that we could meet we would go and meet, even the characters he didn't know. Captain Hook? He'd never seen Peter Pan, but he gave Captain Hook a high five. It was amazing. So we were like, "Okay. We gotta go to Disneyland now."
He didn't go on the waterslide, but he loved the pool. One of the excursions that he absolutely loved that we were a little worried about, we knew he would have fun, but we weren't sure was a helicopter trip to a glacier. Then we went dog sledding on the glacier.
We had to practice with headphones, because he doesn't like anything on his head. So we practiced for like three months before the trip having him wear headphones. And he was great. I think he was so excited to be on the helicopter.
We weren't sure what he would be like with the dogs, because we have a cat, and we don't have a dog. He just absolutely loved the sled dogs. It was the best excursion that we could have ever done.
AotS: I'm going to go out on a limb here and assume that having a child on the spectrum, you probably don't get to go out and have me time or alone time with your husband, right? Did you get to enjoy that on the ship? Did you take advantage of the respite?
Rachel Lack: Oh yes. We did. We had about three hours of respite a day when we were sailing. Then on port days, we had one to two hours at night. It was great. They had movies on the boat. I think we went to see Solo, my husband and I. I was able to spend time with my older cousin, my older niece and nephew who are 16 and 13. That was great. Because there were so many of us we could do that. The respite was amazing. You felt like you were a normal family again. You could actually sit and relax for an hour, and you know the people are great. People know that you can't just leave your kid. If you go to a resort or something you can't just leave them in childcare. You can't just leave them with anybody, especially a non-verbal child who can't tell you when something’s wrong. But you feel so comfortable. Henry just loved the staff from the very beginning. Henry had a connection with Sandy and Jamie. It was great. We felt very comfortable. And my niece loved going there too. She loved going with them.
AotS: What advice would you give other families who may be thinking of an Autism on the Seas vacation?
Rachel Lack: You're going to be nervous, but know that you've got these friendly faces that are going to meet you right at the beginning. They are going to take care of you and your child all the way through. They took care of our whole family, not just Henry and Steve and I. They took care of everybody that booked with them. I know you're hesitant to book it, but It's worth it just to get on and off the boat first. That was my worry. Too many people and the meltdowns that might happen. We had no idea how he was going to react. Having these friendly faces right there to greet you at the beginning, because you're stressed -- It's worth it.
You're going to have a great time. Just know that there are people that book it, and then they book immediately the next trip afterward, and there's a reason for that, because you feel relaxed, the kids have fun, and you have fun.
The Bennett family from West Palm, Florida, took their first Autism on the Seas cruise on Royal Caribbean this past June. Their pre-schooler, Camden, who has autism, sailed with the family to Nassau-Bahamas, and according to mom and dad, his socialization and interaction with staffers and other kids surpassed their expectations on a daily basis.
WATCH our interview with Mark Bennett
Autism on the Seas: Give us the highlights of your trip.
Mark Bennett: This was our first cruise, not only with Autism On The Seas, but also the first cruise for Camden. So this was sort of an experiment for everybody. We went on a five a day, four-night cruise, just to kind of keep it a little shorter to see how he would do. We opted for the one-on-one staff experience with a remarkable staffer, Patricia Brown -- She goes by PK. She contacted us ahead of time to introduce herself to Camden via FaceTime, so he wouldn't be surprised when we met on the ship. We prepped Camden by showing him lots of videos on the Royal Caribbean website. Essentially, what happened was the whole experience out-performed any expectations that we could have ever had. We arrived, and all the girls in orange were there at the pier. We boarded quickly and the Autism on the Seas staffers quickly went from strangers to best friends almost instantly. They're so welcoming, so amazing. I couldn't have asked for a better experience. All of the fears that we had were put to rest very quickly, and we're going to make this an annual experience.
AotS: That is so kind of you to say. I know that our viewers are really going to take a lot from that. Tell us a little bit about Camden, specifically. How does autism manifest in his behavior? What are some of the things that you were a little anxious about in terms of taking this trip?
MB: Camden was diagnosed at age three, and his autism primarily affects his social interaction with other people. That has gotten a lot better over the years with ABA therapy, but we wanted to expose him to other children on the spectrum, and not just his classmates in preschool.
One of our greatest fears was elopement. That's a pretty common issue with autistic children, and it was a big problem for our son. We've had at least one terrible incident where we lost him for a couple of minutes. So there is a fear of elopement and losing Camden.
The cruise ship itself generates fears of, obviously going over the rail. There's a lot of pools and Camden is drawn to water. So there's the fear of the water. All of those fears had been thoroughly thought through and discussed with AotS and PK. So it became very obvious that our fears could be put aside for the cruise because that's just how great you guys have been with him.
AotS: Had you taken a vacation since Camden was born?
MB: Yes. Last year in April we went to Disneyworld. We were still living in Georgia at the time, and we drove down to Disney and spent a few days there. We had kind of a hit and miss experience there. Camden was more obsessed with riding the monorail and watching the automatic doors than he was any kind of ride or characters. It was hit or miss. I think for my wife, Thelma and I, it was not as relaxing as a vacation should be. I know I'm sort of the super helicopter parent, and so we were walking around big crowds at Epcot Center and you're afraid of him running away, you tend to not relax as much. That was sort of the issue there. I don't know how he would do now, but that's the advantage of Autism on the Seas. They allow the parents to really relax.
AotS: How did you and Thelma take advantage of the respite?
MB: To honestly tell you, we didn't do a whole lot other than relaxing. We went around and enjoyed the ship, enjoyed the pools, had a drink. Honestly, we didn't know what to do with ourselves. It was a fairly new experience to be on a vacation and not worry about our son. We took part in the excursions, went to the beach. It was nice to be at the beach and not constantly have one of us watching him. PK was there to be involved. They all came with us on the excursions and were very, very involved. So, we were able to relax and get some sun and have a drink, enjoy the music and just do the simple things that people do on a vacation all the time.
AotS: You mentioned that one of the things, in particular, that sticks out in your mind about Camden is the socialization piece. Was there anything that moved you during the cruise? Did he do anything new or different that you were sort of surprised and delighted with, that he may not have done outside of that experience?
MB: You know, he was interacting with other families and other children a lot more than I anticipated. Camden does well around children that he knows, for example, in preschool. He tends to be a little shyer when it comes to kids he doesn't know, but there was sort of a bond that was created with the other kids. He continues to ask about them to this day. "How are they?" He sees a picture, he wants to know, "Oh, there's so-and-so." He was drawn to them, and they shared a lot of experiences, I thought. Beyond that, what surprised me? Not a whole lot. Camden always exceeds our expectations. I think that we know that we're the ones often that hold him back. He's our only one, so we tend to be very, very cautious, but Camden had a blast. He had an amazing time. He called it the Royal Caribbean Hotel, and he's ready to go back and keeps asking about it.
AotS: Mark, for folks who are still out there that want and need this break and just experience a relaxing, fun adventure, what would you say to them?
MB: I would say that it is an experience that you will ... you'll wonder why you didn't do it long ago. All of the anxiety and fears that you may have, like I said, Autism on the Seas have seen those issues, problems. They've already been through that. Every child is different, of course, but they're prepared. They're prepared to handle your fears, and you can always talk to them and you will learn quickly that those fears are exaggerated among the parents and not so much the child.
We realized very quickly that all of the things that we were worried about, we were worried about in our heads, and it was really not founded. I would encourage parents of autistic children, you deserve a vacation. Caring for autistic children is difficult. It is extra difficult compared to non-autistic children, and I think that wears on parents, and I think you need a break.
This is the perfect way to get that break. I love to cruise, my wife loves to cruise, and to me, this is the perfect vacation. We're going to Alaska next year and we're going to make this an annual thing, because I can think of no better way to do it. This is how you relax as a parent of an autistic child.
When typical families plan a vacation, their dreams transport them to picturesque destinations filled with excitement and new cultures, islands of adventure, serene tropical resorts, and cruises that offer something for everyone. In contrast, families with a child on the autism spectrum or other cognitive impairment, often don't dare to entertain their vacation dreams because they cannot overcome their fear of stress, meltdowns, embarrassment, and a host of other concerns. That's how Tiffany Meyers felt. Tiffany has a typical 17-year old son, Noah and a 10-year-old son, Aidan, who has autism and a number of stated phobias. Nevertheless, she was determined to take her family on their first vacation since Aidan was born. She found Autism on the Seas and booked the trip as a Christmas present for her sons. They sailed with us on a seven-night Royal Caribbean cruise to Nassau/Bahamas. Here's her story.
Autism on the Seas: Tell us a little bit about your cruise. Where did you go?
Tiffany Meyers:We traveled from New Jersey and we went to Port Canaveral, Florida, first. From there we went to CocoCay, which is Royal Caribbean's private island and then we cruised over to Nassau.
AotS: You were feeling very anxious up until the day of embarkation. How did the initial onboarding process go?
TM:So, when I found out in December that we were going to be able to take this trip, I was so excited. I thought the wait was going to be forever. Fast forward to June and the packing starts. I'm thinking this is wonderful, we're going on vacation. It wasn't until I got out of my friend's car, who brought us to the port, and I handed my luggage over to one of the gentlemen there, I looked up and I saw the ship... I can't even explain the emotions. It was this overwhelming fear. I looked up at the ship thinking, what did I do? I've gotten my family into this situation. What kind of mom am I? I cannot believe I'm doing this to them. I'm thinking, once we're on that ship, we can't get off. I was terrified, and I'm really trying to just contain my emotions and put on a happy face, but it was very, very, very hard. Once we proceeded to the front of the building, the first thing we saw were these bright orange balloons and a young lady standing there with her orange shirt. I knew who she was, and she knew who we were, and she came right over. And no kidding, within five minutes of meeting her, I was crying.
Autism on the Seas – On “Special” Vacation with Kim and Andrew Poppins
Autism on the Seas recently caught up with Kim Poppins, a single mom of a handsome teenage son with autism. After a stressful divorce, Kim needed a break to find some space, have some fun – and not feel isolated. She found the Autism on the Seas Facebook Page and quickly connected with other families. After listening to others’ experiences and sharing her vacation dreams, Kim decided to take the plunge with her 16-year-old son, Andrew, and joined AotS and staff on a 7-night Royal Caribbean cruise last February. Watch our podcast and read the Q&A below to hear her story to learn about the positive effects this trip imparted on her and Andrew.